Saturday, July 13, 2013

Not sure what to say

This post is hard to write. I'm not even sure where to begin.
As most of you know, Oliver has been battling pneumonia since the end of June. It didn't respond to his usual antibiotic, that has worked so many times in the past 9 months. We tried a second, broader spectrum antibiotic. On day 3 when his lungs sounded even worse we realized we didn't have time to "wait and see" if it would eventually start working, so we started a third, even harsher antibiotic to kill off the bug infecting his lungs. He was on this one for only 2.5 days and had explosive diarrhea, and was becoming dehydrated. He was also losing massive amounts of weight. In just 2 weeks he dropped from from 33 lbs to barely 28 pounds. We could see all of his bones, he didn't look like our sweet chubby cheeked Oliver anymore, he looked like a skeleton. On Wednesday we had to stop this third antibiotic, his lungs only sounded worse, and the dehydration was taking it's toll. We didn't know if we had any options left, but our hospice nurse called his Dr, who spent the next two hours researching possible courses of action. Meanwhile Oliver developed a mottling pattern in his skin on his feet, ankles, and partly up shins. Mottling is a blotchy bluish pattern that occurs when the limbs aren't getting enough oxygen because the body is reserving all it's oxygen to run the vital organs. This was ominous. It's a sign your body is shutting down. In adults once mottling of the skin starts, death usually occurs within 24 hours.

Our usual worry became a sickening terror. It takes over your body, you can't focus on anything, except the fact that you might have to say goodbye really soon. How on earth do you prepare for that? Since last April we've known the horror of imagining our son's last moments, it's a thought we've tried to lock deep in the back of our minds since we heard the words "terminal" and "no treatment options". Even locked away, even "making each moment count" we always knew it was there, like a shadow over our small moments of happiness. But imagining and experiencing are never the same thing. How will we possible handle the indescribable sadness of holding our baby as he takes his last breaths? He's 3 years old! He's our baby, we shouldn't have to do this!

We asked our nurses if we could be alone and we spent the night crying and cuddling our little boy. We got a phone call around 6:45pm, there was another antibiotic we could try. Just one. Last one. Last hope. Chris sped to the pharmacy to pick it up. We are grasping at straws, but knew we had to try it or we'd never be at peace. He had that first dose on Wednesday night, and yesterday(Friday) his lungs sounded no better, and he still has a fever, though the skin mottling has faded down to just the soles of his feet. Our nurse said kids are like that, they don't give up as easily, they fight, fight, fight, they rally. We don't know yet if it's working or not.

We're giving it time, it's all we can do. His breathing is easy, and he's been sleeping a lot, but he's comfy and peaceful and whether this antibiotic works or not, that's all we're asking for.

As only someone caring for a terminally ill loved one would understand, we find ourselves torn at times, at all times actually, torn between wanting to try everything and anything on the face of the planet to help him and just, well, just letting him go, letting him be done fighting, letting him be at peace. We know we're losing him, we've been watching him fade. MLD has stolen everything from him, there is really only one more thing for it to steal. When do we just let him be at peace? There is no right answer, there is no wrong answer and our answer is always changing.





27 comments:

  1. I truly understand. : (

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  2. Thinking of and praying for your family. I have been following your blog for a couple months and fell in love with Oliver. I cannot imagine what you are going through (I have a son a month younger than Oliver). If hope and love could change the outcome, he would live forever! I am so sorry.

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  3. There are no words. Just tears.

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  4. I'm a friend of Angie's from longgggg ago and I've followed your blog and updates for a little while. I couldn't find the words to post. I just can't imagine your pain and the feel of your whole world shifting as yours must on a daily basis. I pray for you both AND your son and my heart breaks every post. My love and strength to both of you as you fight. <3 Amy

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  5. Suzanne FosnaughJuly 13, 2013 at 3:18 PM

    Kathy is right,there are no words just tears. Thank you for letting us all in and getting to know Oliver thru your blogs. He is a special little boy and and a precious soul. I keep praying that God will let a miracle happen and heal this child. If there is anything I can help you with,please let me know.

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  6. I've been following your blog for about six months. Oliver is a beautiful, special little boy. My heart breaks for you all. Everytime I log in, I hope to see miracle has taken place. My thoughts and prayers are with you all, whatever you chose is the right answer. Oliver is a precious little boy, with wonderful parents. I wish I could ease your pain. MB

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  7. Prayers for your family as you go through this unbelievable time.

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  8. sending all my prayers your way.

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  9. Not sure what to say as no words can bring you comfort but please know that we are praying for all of you and hope that God will bless each of you with strength to get through everything that happens.

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  10. Tears down my face after reading this.... I can feel your pain and you have been so strong. I know you will continue to be for Oliver. We are all on your team :(

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  11. Praying for your family!!!

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  12. That picture of Ollie holding his Dad's hand is perfect. In it i see a little boy giving comfort to has Dad, while at the same time getting comfort and strength in return. You are a remarkable family. You don't know me, I live in a neighboring town and I've been following this blog for some time. I have you all saved to favorites and I always hold my breath while getting to your site, hoping to see a positive post. This last post is so heart wrenching. I have said this in several posts and I hope you all feel the love that is being sent to you by so many. God chose you two for this difficult journey for a reason, I don't know what that reason is, but someday you will. I will pray extra hard for the 3 of you tonight........

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  13. When he is at peace you will feel relief along with sadness. And then you will move on in the noledge that he is safe and in gods loving hands.

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  14. God love you and be with you; I will pray for you to have strength, I will pray for Oliver to help you know what the answer is. - Kathy

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  15. Prayers to you and Oliver

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  16. Praying for a miracle for you and your little boy.

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  17. There has to be a special place in heaven for children who are loved as hard and by as many as little Oliver. When God does call him home, he's going to experience a peace we can't even imagine. He will run and laugh and climb and meet his brother. And you will see him again someday...in his glory this time. I truly believe that. Love and peace to you all.

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  18. Oh, Katie... I really don't know what to say except that I am sending prayers to you and your family. No one should ever have to go through what you are experiencing and I'm just so very sorry.

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  19. Praying for a miracle for you and your little boy. I cant even imagine what you and your husband are going through. Sending you strength, hugs and prayers.

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  20. Praying, crying, and praying some more. God bless you.

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  21. I can't even look at this site anymore without getting choked up... I have no way of knowing the pain you are both in but all I can say is to hold onto your little boy as tight as you can and cherish every moment you have together. Let love fill your hearts and your home... As a Dad myself I know I will hold my little man a little bit tighter as this story shows just how fragile our lives really are... My prayers go out to you and Chris tonight...and more importantly my prayers for your little boy who has taught us all to look at our lives a little bit differently tonight. May you all find the true peace and answers you are searching for...

    Anonymous...

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  22. There are no words for the pain that your family is going through. Please know that our hearts are breaking for you.

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  23. God Bless you and little Oliver. I am so sorry. May God wrap his arms around you and Oliver and may you all be at peace one day.

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  24. I have no right words but please know you three are surrounded by love and prayers.

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  25. Katie and Chris,
    There is a heaviness on my heart and I have no words for all this pain. I hope that all the prayers we all have given will help you have peace. You both are amazing parents and Oliver is blessed to have you both. Love surrounds him each and every day. God bless you all!!!

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  26. God bless you both for your strength to know what to do for your beautiful boy. My prayers go out to you.

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  27. Hope Oliver is feeling better today and the new medication is helping him....

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